“I Am a Child, Not a ‘Case’.”
Saturday October 7, 2017
WE C Hope CEO and retinoblastoma survivor, Abby White, explores the effect of doctors and reporters referring to retinoblastoma patients as “cases” rather than as children. Can the language we use impact patient well being, conduct of research and care? First published in May 2012.
A Child With Cancer Is So Much More Than A “Case”
As World Retinoblastoma Week approached in May 2012, I was very happy to see so many good articles in news media around the world. The media has vast capacity to help educate the public about simple early signs of retinoblastoma, and the importance of prompt eye exams to save children’s life and sight.
However, I was (and continue to be) sad to see journalists and medical professionals alike repeatedly referring to children as “cases”. In one article, a doctor was extensively quoted, providing excellent information and insight, but the word “child” or “children” was not used once. Instead, I read phrases like “by the time the cases come to us…” and “if the cases are diagnosed early…”.
A comforting hug from Elmo after surgery.
From these quotes to the article’s end, the journalist used only the word “case”.
Sometimes journalists working to tight schedules unintentionally misquote, and I know the doctor quoted in this particular article cares deeply for the children she looks after. Even so, using the word “case” instead of “child” is a bad habit of both journalists and medical professionals. As a survivor who daily advocates for families and survivors, this grates very much at my psyche.
All Eye Cancer Treatments Impact the Whole Child
A young boy is wrapped up in a hug from Elmo.Patients with retinoblastoma are first and foremost children who happen to have cancer in their eye/s. They are not a cancer-filled eye attached to a body. Defining a child as a “case” dehumanizes them, marginalizing thoughts of their complete wellbeing and that of their family.
Perhaps this unconsidered slight of tongue contributes to some of the challenges we face today, as increasingly competitive research risks eclipsing focus on the whole child. Treatment is not simply the process of eradicating cancer. Can we really say we have cured the cancer-free child who has post traumatic stress disorder after months or years of treatment and invasive procedures? Has that treatment truly been a success for the child?
In evaluating different treatments, we must consider the ability of each to destroy the cancer. We must also appraise side effects and risks – including psychosocial impacts. We must weigh the value of each treatment in relation to the child’s complete wellbeing. We must look beyond the physical body, to also embrace care for the child’s emotional health, during therapy and long after into adulthood.
“Case” is a very cold, clinical term, and it does have it’s place in scientific discussion. Perhaps it is also a healthy boundary for medical professionals who work very hard and could so easily be emotionally burned out by the daily challenge of delivering expert care to seriously ill children.
Focus On The Whole Child For Complete Wellbeing
However, a child with retinoblastoma is not a medical specimen. They are a complete individual with thoughts, feelings, hopes, dreams, likes and dislikes. They have the ability to generate every kind of emotion in those of us who care for them. They are desperately loved, and most parents would give their own eye if it could spare their child’s suffering.
We are blessed that our international Rb world is home to many brilliant doctors, nurses and scientists dedicated to improving outcomes for children with retinoblastoma. Perhaps if we collectively take care to consider “children”, “families” and “survivors” rather than “cases”, we will together establish a level ground on which we can both treat the cancer, and heal the spirit in equal measure to set the child up for a healthy, happy future.
Rati takes comfort in her special bear during chemotherapy treatment.
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